Full project title: “Access to and use of health data in the health care and consumer health sectors for research purposes. An ethical, legal and social analysis.” This project is funded by the German Ministry of Education and Research (BMBF). Project description on the BMBF website here.
The use of accumulated health-related data for health research is one of the most promising areas of health innovation. The contexts of data collection and use can vary widely. They include highly regulated and institutionalised areas such as the use of clinical data generated by the treatment of patients. On the other hand, there is the use of data generated by healthy individuals through the use of mobile devices and wearables, shared on social cloud services and sometimes evaluated by the consumers themselves.
The overarching goal of DaDuHealth is to develop recommendations for the regulation of the access to and the use of health-related data. To do so, DaDuHealth analyses legal and ethical-conceptual framework conditions of data use. It additionally examines institutional guidelines, social trends, usage behaviour and stakeholder interests in the medical-institutional and consumer health technology sector. With the help of interactive methods, the public is involved in the discussion. Accordingly, the project contributes to ethical, legal and social questions of digitization, Big Data and artificial intelligence in health research and care.
SP1: Legal provisions relevant for access and use of health-related data for research purposes (PI Silja Voeneky, University of Freiburg)
SP2: General ethical principles and framework for access to and use of health-related data for research purposes (PI Joachim Boldt, University of Freiburg)
SP3: Ethical tensions and institutional requirements for clinical big-data data collection, data integration and data access and use (PI Philipp Kellmeyer, University Hospital Freiburg)
SP4: Consumer Health Technology data: User actions and their social contexts (PI Christopher Coenen, KIT Karlsruhe)
SP5: Science Communication and Outreach (PI Oliver Müller, University of Freiburg)
Funding period: 2020 – 2023
Total funding: EUR 1,2 million